Meeting of the Parliament 13 January 2026
I recognise the fact that many people in Scotland are living with more than one condition. It is important that we as a Government recognise that—I believe that we do—and that we work with health boards to ensure that the person is at the centre of care. I would be happy to have a further conversation with Ms Lennon about that.
Several people have commented on the fact that PKU is deemed a rare disease. Scotland has its first rare disease action plan, which is designed to tackle what genuinely matters to individuals and families. We will work closely with the community through Scotland’s rare disease implementation board to ensure that the plan is delivered effectively.
As many people have noted, PKU specialist care in Scotland is delivered through the inherited metabolic disorders service and is commissioned nationally by NHS National Services Scotland. Rona Mackay, Katy Clark and Monica Lennon all noted that there have been some staff concerns in that area. As I understand it, the IMD service has been carrying a clinical lead vacancy for some months. The post has been advertised and interviews will take place this month—I hope that that goes some way to alleviating the situation, but I recognise that we need to spend more time looking at it and I appreciate members’ contributions on that.
In relation to new and existing medicines, the Scottish Government remains firmly committed to increasing the availability of medicines that the people of Scotland need. Through the Scottish Medicines Consortium, we have a robust, independent process for assessing the clinical and cost effectiveness of new medicines, which ensures value for patients and the NHS.
I will clarify briefly the current position on access to medicines for people in Scotland who live with PKU, because I know that it is important for them and their families. The branded version of sapropterin, known as Kuvan, was assessed by the SMC in 2018. At that time, it was not recommended for routine use in the NHS in Scotland because the evidence provided by the pharmaceutical company did not demonstrate its cost effectiveness. The company chose not to resubmit to the SMC. In 2021, the first generic version of sapropterin was licensed in the United Kingdom. Generic medicines are medicines that are outwith their patent period, so they can be manufactured and supplied by a number of companies. The assessment of generic medicines falls outside the scope of the SMC. To support access, a procurement exercise was undertaken by NHS National Procurement, which resulted in a significant discount in the generic price.
Fulton MacGregor rose—